Big Win for Disability Advocates in Health Equity Research

Big Win for Disability Advocates in Health Equity Research Image

One of our core missions is to provide legal services to persons with disabilities and their families in estate and long-term care planning. A great many of our clients have special needs or have a loved one who does.

The Washington Post recently reported a big win for disability advocates who succeeded in having the National Institute of Health (the “NIH”) include persons with disabilities in their list of “health disparity populations” who have barriers to health care.

A “health disparity population” is a term used to describe a disadvantaged group that experiences preventable differences in health. Existing groups include race, gender, and other underserved communities.

The NIH is the largest single public funder of biomedical research in the world.

The designation is a big win because it is expected to dramatically increase research and resources to improve health care for persons with disabilities.

Refuting the Counter-Recommendation

The win comes against a recommendation from the National Advisory Council on Minority Health and Health Disparities against the designation, citing a lack of a standardized definition of disability and the broad nature of the disability population, and arguing that these issues could overwhelm existing NIH staff and budgeting.

Immediate reply from hundreds of disability organizations, advocates, researchers, and health care professionals followed, and the Council which had recommended against the designation backed down, excluding its recommendation from its final report and taking no position on the designation.

Disability researchers pointed out other designated groups have their own complexities as well, for example, race and gender identity, and that complexity is not a good reason to ignore those populations. Stated Jae Kennedy, professor of health policy and administration at Washington State University, “If we want to be a healthier country and a more inclusive country we need to understand and develop policies to support this frequently ignored minority population.”

The Ripple Effect

Professor Kennedy added that not only will the new designation increase funding and research at the NIH, but also an important ripple effect is expected: universities and organizations that compete for NIH funding will be encouraged to make their own workplaces and research projects inclusive of diversity.

Disadvantages Persons With Disabilities Face in Accessing Health Care

Too Little Research on Barriers to Accessing Health Care. Disability advocates point to too little research on the challenges persons with disabilities face in accessing health care.  The NIH on Minority and Health Disparities reported only about 3% of disability-related research grants across all NIH Institutes from 2018 to 2022 also addressed health disparities, despite significant data showing persons with disabilities have poorer health outcomes than those without disabilities, including higher mortality rates, chronic pain and emotional distress.

Socioeconomic Factors. A disability alone can negatively impact health, but a number of socioeconomic factors also contribute. Researchers point to higher rates of poverty, incarceration, and homelessness, along with lower rates of employment – each of which can be a barrier to obtaining good health insurance or health care itself.

Physical Barriers. Researchers report other factors that lead to worse health for persons with disabilities include: limited transportation access, physical barriers to entering health care facilities, and a lack of accessible equipment. One example is the need for scales that weigh someone who uses a wheelchair.

COVID-19. Researchers report COVID-19 disproportionately affected persons with disabilities. Groups with intellectual disabilities were at higher risk of contracting the virus and were more likely to die from it. Other persons with disabilities could not access COVID-19 testing tools. Others suffered from shortages in medication and supplies they needed to survive. In this way, COVID-19 outcomes helped to bring to the forefront the health care disparities of persons with disabilities and the urgency to research and address those disparities.

Shifting Focus from “Fixing” Disability to Improving Health Outcomes

The designation is part of a greater push to improve health outcomes for persons with disabilities and change the way medical institutions treat disability.

Rather than “fix” or cure disabilities, which had been the focus of doctors and researchers, the focus is moving toward improving overall well-being.

Indeed, NIH is undertaking an effort to change its mission statement, one goal of which is to “reduce illness and disability” to “optimize health and prevent or reduce illness for all people.”

Including Persons with Disabilities in Health Care Industry

Disability advocates also seek greater representation of researchers and health care professionals with disabilities in the industry, better medical school training on how to treat persons with disabilities, and more accessible medical equipment in hospitals and health care facilities.